This time anyway. Yesterday went well overall. Had a slight bit of nausea but a bit of ginger ale helped alleviate it (thanks for the suggestion Min). Worked all day then came home and rested. Getting a little bored actually. I've been eating and my weight has started to come back up already and I'm feeling good this morning after a nice sleep.
Dave & Jerry, some good friends of mine from Maplewood/South Orange (M/SO), are coming out on thursday night for a visit. There is an Italian restaurant/bar where we all used to hang out quite a bit (they still do), the owners of the bar have been very supportive since they heard the news and will be supplying food for them to bring to me. A lot of good people in this world.
Got to head to work,
--Dr. D
Wednesday, September 27, 2006
Monday, September 25, 2006
Home and Feeling Alright
Got into chemo around 1:45. The first thing they do in chemo is put in an IV to hydrate you w/a liter+ of fluid and then hit you with a lot of anti-nausea meds to make sure you tolerate taking the chemo drugs and then they administer the chemo meds one at a time. Each of the chemo meds takes about a half hour and there are two of them that I am taking, Irinotecan and Cisplatin. This week I didn't get the experimental drug, Bevacizumab (aka Avastin), as I only get that every 3 weeks. This cut 90 minutes off of the overall time and I finished up around 4. On the way home, I stopped by the grocery store and bought a whole bunch of stuff. Since I got home, I've been resting and eating like a pig. Feeling pretty good, all things considered.
I'd meant to give more of a summary of my treatment this last weekend when I had some time but that didn't work out too well this time around so I'll give a quick overview now. For the chemo, I'm 2 weeks on/1 week off over 12 weeks. This means next week, no chemo (yeah). At week 6, they will run some more tests to see how I'm responding to the treatment and then they will add in radiation treatments - radiation will be 10 minutes/day, 5 days/week over 6 weeks. I will be getting the experimental drug (Avastin) every three weeks during this time frame as well. It doesn't have the side-effects that the chemo drugs have and is pretty well tolerated overall. Dr I mentioned today that he has been trying to get it for clinical trials in the treatment of this cancer for the last 2+ years but FDA approval was slow in coming despite its positive results in similar cancers - he just got approval in August.
Swallowing has already become easier for me and I asked Dr. I if this was likely just placebo effect. He said that, based on trials w/other cancers, the chemo & Avastin had quite likely shrunk the tumor considerably already. It'll be interesting to see the results when they retest me at the end of week 6.
All the best
--Dr. D
I'd meant to give more of a summary of my treatment this last weekend when I had some time but that didn't work out too well this time around so I'll give a quick overview now. For the chemo, I'm 2 weeks on/1 week off over 12 weeks. This means next week, no chemo (yeah). At week 6, they will run some more tests to see how I'm responding to the treatment and then they will add in radiation treatments - radiation will be 10 minutes/day, 5 days/week over 6 weeks. I will be getting the experimental drug (Avastin) every three weeks during this time frame as well. It doesn't have the side-effects that the chemo drugs have and is pretty well tolerated overall. Dr I mentioned today that he has been trying to get it for clinical trials in the treatment of this cancer for the last 2+ years but FDA approval was slow in coming despite its positive results in similar cancers - he just got approval in August.
Swallowing has already become easier for me and I asked Dr. I if this was likely just placebo effect. He said that, based on trials w/other cancers, the chemo & Avastin had quite likely shrunk the tumor considerably already. It'll be interesting to see the results when they retest me at the end of week 6.
All the best
--Dr. D
Waiting for Chemo
Currently at MSKCC, just saw my oncologist, Dr. I, and will be getting my chemo treatment shortly. Dr. I and I discussed my first week - he thinks I'm responding well already and gave me some advice on how to deal w/some of the problems I was having this weekend. According to my blood tests, I seem to be tolerating the treatment well and the only negative is that my weight is down this week which pretty much happened over Frdiay and Saturday. Dr. I thinks I'll bounce back from that by making some slight adjustments to my diet and encouraged me to stop drinking just water (in such large quantities that I feel full) and instead start drinking more fluids w/calories in it - he recommended soy shakes in particular; I plan to try them and a bunch of different things as well.
More when I'm done w/my treatment.
--Dr. D
More when I'm done w/my treatment.
--Dr. D
Sunday, September 24, 2006
Better Today
So I'm feeling much better today than yesterday. Spent most of yesterday laying in bed going between sleep and watching star trek and the matrix. Min dropped by in the afternoon w/some groceries and hung out for a couple of hours, all of which was awesome of her. I wasn't that hungry or much good company but it was nice to have someone there for a while.
In the late evening I finally started feeling better and was finally able to concentrate for a while. This morning, I got up, showered and shaved which I really needed. I also went and did a bit of shopping, including stopping by a mexican place nearby where I did takeout on some tacos which didn't survive long - I was hungry. I spent most of today in bed still but feeling much better and eating throughout the day.
My next chemo session is tomorrow - not sure what time but will call in the morning to find out (should be in the afternoon). Hope to post after that depending on how I feel.
Thanks for all the calls & comments
--Dr. D
In the late evening I finally started feeling better and was finally able to concentrate for a while. This morning, I got up, showered and shaved which I really needed. I also went and did a bit of shopping, including stopping by a mexican place nearby where I did takeout on some tacos which didn't survive long - I was hungry. I spent most of today in bed still but feeling much better and eating throughout the day.
My next chemo session is tomorrow - not sure what time but will call in the morning to find out (should be in the afternoon). Hope to post after that depending on how I feel.
Thanks for all the calls & comments
--Dr. D
Saturday, September 23, 2006
Rough Day
Hi All,
Yesterday wasn't too bad, felt a bit like I was hungover most of the day but everything went pretty well.
Today was s different story; felt good this morning but shortly after I got to work started feeling horrible. Took some of the meds but they only helped so much. Went home around 4, laying down felt a lot better. Min dropped by around 7:30 w/some pizza which was awesome. Bad news - didn't feel good today; Good news - did manage to eat and drink and am doing okay. Very tired at the moment, heading back to bed. More later.
--Dr. D
Yesterday wasn't too bad, felt a bit like I was hungover most of the day but everything went pretty well.
Today was s different story; felt good this morning but shortly after I got to work started feeling horrible. Took some of the meds but they only helped so much. Went home around 4, laying down felt a lot better. Min dropped by around 7:30 w/some pizza which was awesome. Bad news - didn't feel good today; Good news - did manage to eat and drink and am doing okay. Very tired at the moment, heading back to bed. More later.
--Dr. D
Wednesday, September 20, 2006
Quick Update
Appreciate all of the comments and calls - keep 'em coming.
On Monday morning I weighed 195lbs, when I got back home I weighed around 200lbs - that was all the fluid they had pumped into me (and I'd made several trips to the bathroom while they were pumping it into me). I was tired but not really sleepy so I ended up awake until about 3:30 - making plenty more trips to the bathroom (the plastic trash can started looking really tempting around 2am :p). Guess it didn't help that I drank an extra liter of water and gatorade but one of the meds can cause kidney damage if you don't drink enough fluids (i.e. 2+ liters) for the 2 days following treatment so I figured too much wouldn't be a bad idea. I had some slight cramping that evening but I think it was the gatorade rather than anything else so next week I will stick to straight water on Monday night.
Tuesday I went to work and felt pretty good most of the day. Drank over 2 liters of water while at work and, as such, got plenty of exercise walking. Dr. S called to see how I was doing after my first session. I had previously sent him this blog address and he's been reading it - like I said he's a stand up guy. He thinks the blog is a great idea, a sentiment that many of you have also expressed. When I got home, I was exhausted so I took a nap for about an hour then forced myself to get up and make some food (thankfully my sister called or I might have just skipped dinner). I was slightly nauseas but fell asleep pretty quickly; up a few times but a good, long sleep overall.
Today, despite the good sleep, I was a little foggy in the morning. Not sure what that's about but I was pretty good for the rest of the day. Drank a lot again.
While the nausea is mostly under control, I did have it slightly for most of the last two days which really cuts down on my appetite. To deal with this, I've avoided large meals and have taken to eating smaller snacks throughout the day - lots of vegetables, fruit, nuts, and oj (they provide this for free where I work so it works out pretty well) plus some kind of protein at night (had me a bubba burger tonight). I think I need to track calories a bit better just to make sure I'm getting enough to eat but I'm pretty sure that I am.
Tommorow I stop the meds I've been taking for the last two days to counteract the sideffects of the chemo meds. There's another med they've provided for me to take as needed - hopefully I won't need it but I'll have it with me just in case.
Going to try to hit the gym in the morning before work - just a bit of cardio but I think it will help me overall.
Good Night All
--Dr. D
On Monday morning I weighed 195lbs, when I got back home I weighed around 200lbs - that was all the fluid they had pumped into me (and I'd made several trips to the bathroom while they were pumping it into me). I was tired but not really sleepy so I ended up awake until about 3:30 - making plenty more trips to the bathroom (the plastic trash can started looking really tempting around 2am :p). Guess it didn't help that I drank an extra liter of water and gatorade but one of the meds can cause kidney damage if you don't drink enough fluids (i.e. 2+ liters) for the 2 days following treatment so I figured too much wouldn't be a bad idea. I had some slight cramping that evening but I think it was the gatorade rather than anything else so next week I will stick to straight water on Monday night.
Tuesday I went to work and felt pretty good most of the day. Drank over 2 liters of water while at work and, as such, got plenty of exercise walking. Dr. S called to see how I was doing after my first session. I had previously sent him this blog address and he's been reading it - like I said he's a stand up guy. He thinks the blog is a great idea, a sentiment that many of you have also expressed. When I got home, I was exhausted so I took a nap for about an hour then forced myself to get up and make some food (thankfully my sister called or I might have just skipped dinner). I was slightly nauseas but fell asleep pretty quickly; up a few times but a good, long sleep overall.
Today, despite the good sleep, I was a little foggy in the morning. Not sure what that's about but I was pretty good for the rest of the day. Drank a lot again.
While the nausea is mostly under control, I did have it slightly for most of the last two days which really cuts down on my appetite. To deal with this, I've avoided large meals and have taken to eating smaller snacks throughout the day - lots of vegetables, fruit, nuts, and oj (they provide this for free where I work so it works out pretty well) plus some kind of protein at night (had me a bubba burger tonight). I think I need to track calories a bit better just to make sure I'm getting enough to eat but I'm pretty sure that I am.
Tommorow I stop the meds I've been taking for the last two days to counteract the sideffects of the chemo meds. There's another med they've provided for me to take as needed - hopefully I won't need it but I'll have it with me just in case.
Going to try to hit the gym in the morning before work - just a bit of cardio but I think it will help me overall.
Good Night All
--Dr. D
Monday, September 18, 2006
Chemo Session I - A Long Day
Today ended up being a lot longer than I'd expected. At 8:30 I had to get an esophogram which involves drinking barium while they take xrays. The barium was much tastier than the crystal lite. After that, I met with my doctor and we went over the treatment plan and the cat/pet scan results. The good news is that the results confirms my cancer at stage II, still very localized and no evidence of it having spread to any of the local lymph nodes. I then had to have an EKG done, a urine test, talks w/various nurses/fellows on the possible side effects of the drugs I'll be taking, followed by a lot of waiting while they got the results of the various tests. Eventually around 5, I finally started the chemo - it involves my getting 3 different medications via IV. The first two take half an hour each to administer and the third takes an hour and a half. There are potential side-effects during the administration of the IVs but I didn't have any, which is a good sign. I have some drugs that I take over the next 2 days to deal with possible side-effects of the drugs - if I have any negative side effects, they are likely to show up on Thursday after I'm off those meds. Future sessions will go a lot faster as 1) I won't need to do any of the tests and 2) they'll increase the flow of the IV's so that drugs are adminstered quicker. Tomorrow I'll give a more detailed report on my treatment and it's timeline.
A number of you have expressed distress at seeing me go to chemo on my own. To me, it feels completely natural to do so and I experience no distress on discomfort at being on my own during the treatments. What I do appreciate is the support, messages, and phone calls during the in-between times. This weekend was a bit tough, due to the unknowns, but I made it through pretty well thanks to my friends that visited and my friends/family that called - I have not felt alone at all.
All the best,
--Dr. D
A number of you have expressed distress at seeing me go to chemo on my own. To me, it feels completely natural to do so and I experience no distress on discomfort at being on my own during the treatments. What I do appreciate is the support, messages, and phone calls during the in-between times. This weekend was a bit tough, due to the unknowns, but I made it through pretty well thanks to my friends that visited and my friends/family that called - I have not felt alone at all.
All the best,
--Dr. D
Sunday, September 17, 2006
A Note on Comments
At the end of each of my posts, there is a link called 'comments'. If you click on that link, you will see comments that other people have made on that particular post along with a place for you to post your own comments. You can post anonymously which simply means you don't need have to register with the website or do anything else to post (i.e. it's very simple) though you should sign you name at the end so that I know who you are.
I mention this because I want people to comment on my posts. The point of this blog is to create a community of support - not just for me but for all of us. This blog not only allows me to broadcast to you what's going on with me and how I'm feeling about it but also, by way of comments, gives you the ability to communicate your thoughts and feelings to me and everyone else who is pulling for me. It's very cathartic and I encourage you to give it a whirl.
As Red Green says "remember I'm pullin' for you; we're all in this together"
I mention this because I want people to comment on my posts. The point of this blog is to create a community of support - not just for me but for all of us. This blog not only allows me to broadcast to you what's going on with me and how I'm feeling about it but also, by way of comments, gives you the ability to communicate your thoughts and feelings to me and everyone else who is pulling for me. It's very cathartic and I encourage you to give it a whirl.
As Red Green says "remember I'm pullin' for you; we're all in this together"
Chemo Starts Tomorrow (Mon 9/18)
Chemo starts tomorrow. I have to be there at 8:30 and, according to the schedule, will see my oncologist, Dr I., at 9:45, followed by the treatment at 11:15. Not sure why the long wait but I'll post here as soon as soon as I am able. At my 9:45 meeting I should be going over the results of my pet/cat scans - I feel fine about starting the chemo but will feel a lot better after getting the results.
Speaking of the pet/cat scans, that was quite an experience. I arrived at 4:30, a bit early, and filled out the obligatory paperwork. The nurse then took me to a prep room and asked me to remove my shoes so she could get my weight and height. I told her I prefered doing my height w/my shoes on as I liked that result better but she told me that she had to take my height w/my shoes off to get a consistent reading - she had no sense of humor whatsover (but was nice all the same). Next, I got to sit in the prep room for a while where a different nurse came in to inject the solution for the pet scan into me. It's a radioactive dye and I aksed her how long I would glow in the dark and she said I shouldn't glow at all but, if I did, give them a call - she had a good sense of humor. I thought that was it been then she came back w/a liter of the vile stuff I had to drink for the cat scan. Basically a solution of water, iodine, and raspberry crystal lite - I like water, can stand iodine, but that crystal lite garbage don't not go down so easily; blech. I then had to wait for an hour for the chemicals to get to the various parts of my body before starting the scans. The scans themselves were simple - the pet scan took about a half an hour during which time I fell asleep and the cat scan only took about 10 minutes. Afterwards they gave me a card stating that I was going to be radioactive until 9/16, in case I got stopped by the police in the subway, train station, or airport; Its a great card and is going in my scrapbook. They also recommended drinking a lot of water over the next couple of days to flush the chemicals out of my system.
According to what I'd been told (and read), the pet/cat scans are not supposed to have any real side effects but, when I was done, I felt really fatigued. Could have been that I didn't get much sleep the night before but it was all I could do to eat, post a quick message here, and crawl into bed. That night I had a bunch of nightmares; after each I would wake up and have to go to the bathroom. The next day, I was still pretty exhausted and didn't get much done at work but started feeling a lot better towards the end of the day and a bunch of friends visited w/me on Friday night which made me feel even better. Saturday I just kinda lay around, watched movies, and slept. In the evening, I went out to Maplewood where I hooked up with some friends for a show followed by some dinner. It was then that I really felt myself again.
I can't say unequivocally that the pet scan was the cause of my fatigue but my first cat scan didn't give me any problems and I gotta figure that radioactive dye running through you brain has to have some effect. The card said the radioative dye would be completely broken down by Saturday and it was Saturday evening that I felt fine again. Of course, it could all just be in my mind.
Speaking of the pet/cat scans, that was quite an experience. I arrived at 4:30, a bit early, and filled out the obligatory paperwork. The nurse then took me to a prep room and asked me to remove my shoes so she could get my weight and height. I told her I prefered doing my height w/my shoes on as I liked that result better but she told me that she had to take my height w/my shoes off to get a consistent reading - she had no sense of humor whatsover (but was nice all the same). Next, I got to sit in the prep room for a while where a different nurse came in to inject the solution for the pet scan into me. It's a radioactive dye and I aksed her how long I would glow in the dark and she said I shouldn't glow at all but, if I did, give them a call - she had a good sense of humor. I thought that was it been then she came back w/a liter of the vile stuff I had to drink for the cat scan. Basically a solution of water, iodine, and raspberry crystal lite - I like water, can stand iodine, but that crystal lite garbage don't not go down so easily; blech. I then had to wait for an hour for the chemicals to get to the various parts of my body before starting the scans. The scans themselves were simple - the pet scan took about a half an hour during which time I fell asleep and the cat scan only took about 10 minutes. Afterwards they gave me a card stating that I was going to be radioactive until 9/16, in case I got stopped by the police in the subway, train station, or airport; Its a great card and is going in my scrapbook. They also recommended drinking a lot of water over the next couple of days to flush the chemicals out of my system.
According to what I'd been told (and read), the pet/cat scans are not supposed to have any real side effects but, when I was done, I felt really fatigued. Could have been that I didn't get much sleep the night before but it was all I could do to eat, post a quick message here, and crawl into bed. That night I had a bunch of nightmares; after each I would wake up and have to go to the bathroom. The next day, I was still pretty exhausted and didn't get much done at work but started feeling a lot better towards the end of the day and a bunch of friends visited w/me on Friday night which made me feel even better. Saturday I just kinda lay around, watched movies, and slept. In the evening, I went out to Maplewood where I hooked up with some friends for a show followed by some dinner. It was then that I really felt myself again.
I can't say unequivocally that the pet scan was the cause of my fatigue but my first cat scan didn't give me any problems and I gotta figure that radioactive dye running through you brain has to have some effect. The card said the radioative dye would be completely broken down by Saturday and it was Saturday evening that I felt fine again. Of course, it could all just be in my mind.
Thursday, September 14, 2006
Pet Scan & Cat Scan
It strikes me that there must be a dog scan out there somewhere, probably involving a long, wet, cold, dog-nose like probe - surprised I haven't been asked to have one yet (and don't even get me started on ferret scans).
I have my dual scans tonight at 5. I am supposed to be there at 4:45 so I'll leave work around 4:15. I am not allowed to eat or drink for 6 hours before the scans so I haven't had anything since 11. While I did my best to stock up beforehand, I'm getting hungry now. And thirsty. Of course they have this really vile stuff I have to drink gallons of just before the exam so that will take care of my thirst and likely my hunger too.
I believe that the results should be immediately available, at least that was my experience with my previous cat scan. I don't believe that the scans will be too physically traumatic so I hope to post the results sometime this evening - likely after I get something to eat - so stay tuned.
I have my dual scans tonight at 5. I am supposed to be there at 4:45 so I'll leave work around 4:15. I am not allowed to eat or drink for 6 hours before the scans so I haven't had anything since 11. While I did my best to stock up beforehand, I'm getting hungry now. And thirsty. Of course they have this really vile stuff I have to drink gallons of just before the exam so that will take care of my thirst and likely my hunger too.
I believe that the results should be immediately available, at least that was my experience with my previous cat scan. I don't believe that the scans will be too physically traumatic so I hope to post the results sometime this evening - likely after I get something to eat - so stay tuned.
Wednesday, September 13, 2006
The Strollers
The Strollers, the theatre group I'm a member of, had their first general meeting of the new season last night. At the end of the meeting I announced that I had been diagnosed with cancer, would be going through treatment this fall, and having surgery in early January. I'd debated, up to the moment I did it, whether this was a good idea or not but the response was tremendous. For over an hour after the meeting was over, the members, some good friends, some who've I only known in passing, talked to me and gave me their support. A number of the members are cancer survivors and had a bunch of insights to give me that I really appreciated.
My hair, which I've grown out, got mixed reviews. People either really loved it ("I never knew your hair was so curly, it's awsome") or really hated it ("it's good to see you, even with that hair"). My weight loss got overall approval - I mentioned that one of the things that sucks about the cancer is that I worked hard to change my diet and lose weight slowly and now everyone's just going to think it's the treaments. dammit. :)
Thinking about cutting my hair short so that if I do start losing it during chemo (15% chance) it won't be such a noticable change. On the other hand, part of me says to roll the dice and see what happens.
My hair, which I've grown out, got mixed reviews. People either really loved it ("I never knew your hair was so curly, it's awsome") or really hated it ("it's good to see you, even with that hair"). My weight loss got overall approval - I mentioned that one of the things that sucks about the cancer is that I worked hard to change my diet and lose weight slowly and now everyone's just going to think it's the treaments. dammit. :)
Thinking about cutting my hair short so that if I do start losing it during chemo (15% chance) it won't be such a noticable change. On the other hand, part of me says to roll the dice and see what happens.
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Upcoming Appointments
September 14th, 5pm
I am scheduled to have a cat scan and pet scan done. These scans are to supplement the endoscopic ultrasound I described previously in ascertaining how far the cancer has spread.
September 18th
Chemotherapy begins
I am scheduled to have a cat scan and pet scan done. These scans are to supplement the endoscopic ultrasound I described previously in ascertaining how far the cancer has spread.
September 18th
Chemotherapy begins
Endoscopic Ultrasound Results
Last Friday, the 8th of September, I had an endoscopic ultrasound. This procedure was to determine how far my cancer has spread; it is highly accurate, on the order of 90%+, in detecting cancer growth in tissue but only somewhat accurate, on the order of 70%, in detecting cancer growth in lymph nodes.
My results were good - the tumor is still highly localized. While it has spread through most of the layers of the esophagus, it has not moved past it and does not appear to be in any of the lymph nodes. As I understand it, this is stage 2 cancer (or T3N0M0 for those who understand - I'll explain it's meaning in another post).
My results were good - the tumor is still highly localized. While it has spread through most of the layers of the esophagus, it has not moved past it and does not appear to be in any of the lymph nodes. As I understand it, this is stage 2 cancer (or T3N0M0 for those who understand - I'll explain it's meaning in another post).
Tuesday, September 12, 2006
Google Group hmurakami49 Created
I have just created the google group hmurakami49. If you subscribe to this group, you will get email each time I post a message to this blog. To join the group, go to:
http://groups.google.com/group/hmurakami49
and follow the instructions on that page. You will need to have or create a google account or gmail account in order to join this group, instructions on how to do so are included on the above link.
http://groups.google.com/group/hmurakami49
and follow the instructions on that page. You will need to have or create a google account or gmail account in order to join this group, instructions on how to do so are included on the above link.
Monday, September 11, 2006
A Simple Introduction
Alright, most people won't understand the name of this blog or the first post but that's okay, I'm trying to make it a bit obscure.
I went back and forth on how describe my ongoing experiences w/cancer online vs my concerns about privacy issues. In the end, I decided to create this blog and have gone to some trouble to create it anonymously; I ask you to not use my name directly here in your comments or to send me email directly referencing this site.
I plan to post pictures and to give ongoing information as it comes. I also plan to write an entry (almost) daily once I start treatment - I don't know how detailed it will be but I'll appreciate responses.
regards & thanks for reading,
Haruki
PS - hmurakami stands for Haruki Murakami, my favorite author. His main characters tend to be someone who has lost his way in life and must pursue a long, arduous, surreal quest to find his way back to his life. I feel a lot like that at the moment. His characters are aided by a wide assortment of friends and family - generally really strange folks - that help him get reconnected to the real world. This also remind me of myself and you :)
I went back and forth on how describe my ongoing experiences w/cancer online vs my concerns about privacy issues. In the end, I decided to create this blog and have gone to some trouble to create it anonymously; I ask you to not use my name directly here in your comments or to send me email directly referencing this site.
I plan to post pictures and to give ongoing information as it comes. I also plan to write an entry (almost) daily once I start treatment - I don't know how detailed it will be but I'll appreciate responses.
regards & thanks for reading,
Haruki
PS - hmurakami stands for Haruki Murakami, my favorite author. His main characters tend to be someone who has lost his way in life and must pursue a long, arduous, surreal quest to find his way back to his life. I feel a lot like that at the moment. His characters are aided by a wide assortment of friends and family - generally really strange folks - that help him get reconnected to the real world. This also remind me of myself and you :)
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